Menstrual wellbeing and fertility

“Before I even started my periods, I suffered from crippling pelvic pain every month. When my periods started a year later, the pain got even worse; usually twice a month, I was rushed to A&E and had to be given morphine. By the time I was 14, my quality of life was non-existent – most of the time I couldn’t leave the house. I was still being told what I was experiencing was normal, or worse that I was making it up to gain attention. I was made to feel like I couldn’t talk about what I was experiencing, and self-doubt crept in.”

Alice was diagnosed with endometriosis at 15. Despite endometriosis affecting 1 in 10 women and those assigned female at birth, and a leading causes of infertility, it takes on average 8 years to get a diagnosis. Alice’s diagnosis taking ‘only’ 5 years could be considered relatively quick. But it felt anything but quick to Alice, impacting on all aspects of her life, education, physical and mental health.

Without a diagnosis, many go years unable to access treatment and support. They may have been told by Doctors or family that what they’re experiencing is ‘normal’, their level of pain and symptoms are not believed, or they’re too embarrassed to ask for help. And it can be similar for other menstrual health conditions – PCOS, heavy menstrual bleeding, fibroids, adenomyosis, PMDD – all can impact on education, career, social life and relationships. Yet so many have no idea what’s wrong with them because of the lack of education and awareness around what is ‘normal’ for periods.

Changes to include menstrual wellbeing in the school curriculum in England should be a big step forward in the long term in helping children and teenagers understand that it’s OK to talk about menstruation and so they can seek help sooner should they need to. But the new curriculum needs to be implemented, and rolled out to the whole of the UK. And education and awareness is still needed for those who are no longer at school.

Endometriosis does not necessarily cause fertility issues, an estimated 60-70% of those with endometriosis will be able to get pregnant spontaneously. However, for some it does. At 23, pushing for and having to pay privately for investigations, Alice found out her fertility had been significantly affected by endometriosis. She is now having to make hard decisions about fertility preservation – without any help or financial support from the NHS, despite being due to a recognised medical condition.

To ensure everyone with endometriosis receive the information and education they need around fertility, Endometriosis UK’s would like to see:

• Doctors always asking about fertility concerns and desires.
• Anyone undergoing treatment that may impact on their fertility should be informed of this and offered access to fertility preservation.
• In line with NICE guidance on fertility problems (CG156 ) as endometriosis is a known clinical cause of infertility, earlier referral to a fertility specialist should be offered.
• Those who do not want children should still be afforded the same level of care and access to treatment for their endometriosis and symptoms.

For more information on endometriosis and endometriosis and fertility, please visit the Endometriosis UK website.